The Night The Spirit of Christmas Filled Our Autism Home

photo is a close up of a hand made dove ornament and white poinsettia blossom on a Christmas tree, lots of gold ( Au! ) and sparkling lights

I would not call myself a deeply religious person. I think a more appropriate adjective would be spiritual. 

I was brought up in the United Church, and when my children were small, I taught Sunday School. However I never actually associated church, or my faith, with the building or the rites. It was always the community. 

A Dream is a Wish Your Heart Makes

As a single mother the hardest reality I had ever had to face was that I would never be able to make my autistic son's only wish a reality. All he has ever asked for, from the moment he learnt to speak, was to give Mickey Mouse a big hug, to simply hold Mickeys hand.  As Eric approached his 21st birthday, the big one in my family, I grew more and more depressed. His simple beautiful wish, the only thing Eric wanted out of life, was beyond my grasp. We barely make rent each month, and a trip to Disney is a thing of fantasy. My only dream in life soon became making sure my monkey got his hug. I thought I finally found a way, but then..........

The FIVE Principle

photo courtesy of Luke Hayne, one of my many muses!

Way back when my own, now adult, children received their individual ASD diagnoses,  there was precious little information out there. The Internet was in its infancy and so, to understand what AUTISM - a word I had only heard in Rainman and St Elsewhere- meant, I had to go to what was at the time a specialised, university run, psychological library ( I was young looking enough at the time to pass as a student- first time in my life I lied to 'authorities'). 

I was a techie. I had AOL and operated in DOS, heck I had used punch cards before I entered puberty.

But still, with that, back then the The Internet was NOT an option for information. 

So the University it was. 

I SCOURED the DSM IV ET ALIA.

I (and my children) encountered many , well, ummm, ok, yes, I'm going to say it, we encountered MANY ASSHOLES because the Internet was not as all encompassing as it is now. And people, and yes even PROFESSIONALS, were not as, ummmmm, AWARE, as they are now.

But wait, one sec. 

Back then we at least had the EXCUSE that knowledge of autism was only in university libraries (and was pathetic at that). 

We didn't have the internet to provide us with information at a mouse click any time of day or night.

So how did that leave us knowing MORE then we do now?  And What IS the FIVE principle?

The Allistic's Guide to Autism

Photos courtesy of Luke Hayne

Autism awareness thankfully has come a long way. You yourself are autism aware or you would not be reading this. The next step on the journey is Acceptance, and that begins with LISTENING to those on the spectrum and respecting their wishes as a community. Here is a guide for non-autistics, by no means comprehensive, on how to start being truly accepting. It has been compiled from my own experience and from suggestions from autistic people themselves. You are sure to read at least one thing that surprises you. 

Single Life and the Autism Household

Human beings are built to be paired off.  At some point you seek companionship, in one form or another. Getting out there for the first time after a divorce can be a difficult hurdle to overcome, and finding the right person may seem like an impossibility. Eventually though, at your own pace, you do get out there. You start living life again.

But how does that work in an Autism Household?

When you are the single head of an Autism Household, things are quite different. Routine is so important that you cannot vary, by even a few minutes. So how do you find time to get out and meet people? You cannot just 'hire a babysitter'. You need to secure a respite worker, at a bare minimum of $15-$20 per hour (and that's if you have an EASY kid). If your child is a wanderer, as most autistic children are, or non-verbal. the fear for their safety when leaving them in someone else's care can be overwhelming. 

Family may be well meaning, but they can rarely cope with the challenges you and your child face each day, so those offers of help fade away

If you are able to get a break, perhaps the other parent gets them every other weekend, then there are other concerns. (sadly, this is not the norm in Autism Households. The 'norm' is one parent disappears off the map while the other parents alone, without a break)

IF you are able to get back on the market,

Just WHEN do you mention autism?

I personally have tried every approach.

Right from initial contact, which usually does not work as it tends to push the prospective suitor away. They end up seeing a label, not people.

I've tried later on in the mating dance. Rarely does this work, nor is it fair, as the person has developed feelings for you but may not be up to the challenge of dating (or more) a person with autistic children. They will never admit to this, of course. Maybe not even to themselves. It actually isn't because they're a bad person. Everyone has limits to what they can and cannot deal with in a relationship. Psycho ex-wives are one of those limits for me, but so is living further apart than public transit will facilitate (even though I drive) because it just ends up becoming a chore to see each other. That doesn't make me a bad person, its just knowing myself well enough to know there are certain challenges within a relationship that are difficult for me to get past. For some people, a life as unique as that in an Autism Household is so foreign, and therefore so intimidating, that they just can't do it. No matter how they feel about you. Waiting until feelings have developed before bringing up the fact you live in an Autism Household quite frankly isn't fair. 

So where does that leave you? 

I have found the BEST way is when it comes up naturally in conversation, and it will. For me it is often when talking about chatting on the phone. I will message that I have an autistic son who makes happy sounds, and can be quite loud, so I will call after Xpm when he is asleep. This explains WHY I can't call before that time and sets the stage for any conversation.

OK, so lets say you've gotten to the point you have met someone.

It takes a tremendous amount of patience to date someone heading an Autism Household.  Your developing relationship is different from anything they have experienced before.

It takes much longer for a parent in an autism household to bring an outsider into their home, let alone introduce someone to their children. Our kids need routine out the wazoo. If something messes with that routine they don't just get pouty, it can send them into a terrible tailspin. So not only is it a MAJOR transition to bring you INTO our lives, but we also have to think about what will happen if you EXIT our lives. We will have no time for ice cream and wine after a break up if you have had any interaction with our children. We will be too busy with wilbarger protocol and sensory diets and keeping our child's anxiety in check, anxiety thrown into a tailspin from the change in routine with you gone. That's not fair to them, or us, and once you've been through that you are quite hesitant to go through it again. So you likely will not be interacting with our children, or coming into our homes, for a considerable length of time. This is why most relationships in the Single Autism Household fail to get off the ground. Because we either cannot accept the risk of introducing someone to our home then losing them, or they cannot understand our hesitance.

We have to cancel.

A LOT.

And with very little warning.

Perhaps the neighbour parked their car 2 feet east of where they normally do. Perhaps there was a fire drill at school. Perhaps someone rang the door bell. Perhaps Perhaps Perhaps.

All of these seemingly innocuous events could bring on a full on meltdown for our child, and we will not be able to keep the date

Meltdowns

Meltdowns are a complete loss of control. They ARE NOT a temper tantrum. It is anxiety spirally down to a horrible place or pain from sensory overload that is very difficult for an autistic person to get out of. They cannot 'just stop' . It is terrible for the person in meltdown, and for those who love them and seek to help. A meltdown is not for the uninitiated. 

Nor are the stares and comments of passer by.

It is not easy for us to deal with that, it hurts, even though we are used to it. So imagine just suddenly being dropped into that scenario. To be helpless. To not be able to help you or your child, to not know what to say or do. Most prospective partners, if they lasted this long, grow distant under the strain.

Eventually they find a reason to leave.

And then we're alone again

The only unions I personally have seen succeed (other than something casual) are those wherein the new mate has autism in the mix as well, or has a child with a developmental or physical challenge of their own. I have yet to meet a single autism parent in a long term relationship or who has remarried where the partner did not fall into one of those 2 categories. 

Most of us go through a period of thinking 'what's wrong with me?', and then 'what's wrong with all of THEM'. Eventually you come to realise you will spend your life as a single parent until your autistic child is no longer living at home. At first that makes you angry, very angry. Not with your child, but with the world. Bitter that the world cannot see past the outer layer of the challenges of an Autism Household and see the beauty and joy and love that we have in abundance in our homes. The wonderfully unique window on the world, and the knock you off your high horse learn what is truly important kinda life we lead.  Eventually, once you see how prevalent long term singledom is amongst Autism Parents, once you see that it is not just YOUR situation, you come to terms with it. It is just another of the many commonalities unique to Autism Households. 

Yes, human beings need to pair off, that need does not just disappear simply because you are heading an Autism Household.  Most of us however, will go decades or longer without that companion in our lives. Some see that as a tragedy but it isn't. It is what it is and that is all. Just another aspect of our autistic homes. Our lives are filled with learning each and everyday. Without the pressures of managing a relationship you will get to know yourself extremely well. Something most people strive for, but rarely achieve. You, and your view of life will grow considerably during your un-partnered time. Remember also that you are not truly alone at all. Not even CLOSE to being alone. Divorce rates in Autism Households average in the 90% range. And yes, once there is a split, no matter the intentions of both, the non-custodial parent often ends up fading out of the picture completely. That means that there are a LOT of people out there in EXACTLY the same situation as you. Search them out. Find others who are single raising autistic families. Laugh with each other. Cry with each other. And know that even though you often get lonely, you are never alone. 

In the end what it comes down to is that our children and the lives we lead are uniquely beautiful! 

Don't fret over the lack of a partner. 

Just sit back and enjoy the ride!

Its a Small World After All : How People Around the World are Uniting to Protect Autistic Children from being Poisoned

photo courtesy of Photography by Wayne Pollard

Sometimes being heroic is not one person doing an extraordinary thing. Sometimes being heroic is actually a large group of people coming together to make the world a safer place. 

This is one such story of heroism

The autism community is vast. Recent studies have suggested that 1 out of every 68 children aged eight will have a diagnosis of autism. That means that chances are VERY LIKELY that you will know, love, care for or even are yourself an autistic person. As with any emerging 'minority' group fighting for its rights, there are many divisions within the autism community. That divisiveness takes away from all the accomplishments and the huge strides we've made in awareness and acceptance. 

SO instead, today, I want to talk about something that is UNITING the autism community, worldwide.

But I have to start by way of bringing up a controversy. 

I have to use a four letter word, well two actually.

FEAR

and

CURE

Now whatever your opinions on the matter, I would like you to put them aside, because although this story has at its route horrible abuse happening in the name of a 'cure', it is in truth about those fighting to protect our children from being poisoned.

And that is something that should not be attacked. This worldwide movement should, and will, be lauded.

Let the story begin

Developmental and Mental Health. Last Bastions of Acceptable Discrimination? Guest blog author: Christopher Scott Medeiros

Today I turn my blog over to a very special guest writer. This is a subject near and dear to my heart, as is the author. 

Developmental and mental health disorders (DMH) are the last bastion of acceptable discrimination in modern society. Discrimination based on sexual orientation, religion, creed, colour and socio-economic status still exist, but are frowned upon.

However it is quite acceptable to make “retard” jokes.

People use the word retarded (and its variations) in common lexicon without any thought to the pain that it may cause to the person beside them. The general population does not see how using a slur like the r-word can be harmful. End The R- Word is a movement organized to bring awareness to this discriminatory practice, but it is having trouble getting support outside the DMH community.

People who disclose their mental or developmental health issues are also routinely denied paying jobs. If that happened to any other segment of society there would be outrage and charges laid *

Is this discriminatory tide turning?

The ADHD Mistake

 Asperger's Disorder is increasingly being diagnosed in adults, ruling out previous diagnoses of ADHD.

So why the mistake?

How THIS mom reacted to an ignorant stranger many years ago, and what will come of it!!

Chlorine Dioxide Treatments, The ''CURE'' For Autism

Since Autism was first used as a term in the early 1900s people have been looking for, and touting, various cures. The latest fad miracle is Chlorine Dioxide (MMS- or Mineral Miracle Supplement) Treatment. Several books have been written on the subject, new websites are popping up everyday, and suppliers are emerging so fast it is hard to keep track of them all. Hoards of parents are using the various forms of Chlorine Dioxide treatment in the hopes of curing Autism. 

Should we be using bleach-based oral therapies for our children?

To Most, Just a Number in the Huronia Regional Facility. To Us He Was, and Always Will Be, Our Phil. A Personal Story For Autism Awareness Month

Mischievous, Loving, Loyal, Athletic, Sweet but a bit Devious. 


This, and more, describes my brother Phil. 

But for most of his life he was known simply as a 'client', a 'resident', of Huronia Regional Facility for the Mentally Retarded, now thankfully closed down. 

To them, and to many, many people out in the real world, Phil was just a 'thing'. SomeTHING to pity. In honour of World Autism Month, I want to tell you about Phil, THE PERSON.


Let me introduce you to my brother.

Will The Harmony Prenatal Test mean the Eradication of Down Syndrome, Autism and More. And Is That a Good Thing?

If you knew your unborn baby had Down Syndrome. Or Autism. Or ADHD. What would you do?

Autism and Ageing

The first generation of Autistic people to remain in the community rather than being "housed" is ageing. 

Are we prepared?

Something parents of people with more challenging forms of autism will not tell you is how much we fear ageing. Both for ourselves and for our children. We won't tell you because it taps into our greatest, and most self-loathing, wish. Our wish to live longer than our children with special needs. 

Why? 

Not because we want our child's life shortened. Far from it! 

It's because the fear of what will happen to our children when we are gone is so real and pervasive that we can't escape it. So we pray we live longer than our children so that SOMEONE will always be there to protect them. 

Why should we be so afraid? 

Is it because we believe our child should only be with us, never venturing into the world? 

Are we hindering our adult children's development and independence? 

Is it some egocentric act to make sure we are always "in charge"? 

No. 

It is because there are no supports in place in society for our children. 

And it scares us. Rightfully so.

What happens as the family caregiver ages and is no longer able to provide a home or support or advocacy for the autistic adult?

What happens as the autistic person them-self ages?

There is little to no information on how typical age-related illnesses and disorders present in an autistic person with cognitive delay and/or great sensory, communication or anxiety challenges. There has never been a generation before now of people with such developmental challenges who aged within the general population. In the past our children were taken from us and were horribly and cruelly kept in institutions, as far from sight as possible. They were drugged to the point of catatonia and confined and restrained and abused. Most did not live to a full life expectancy. It was a horrible existence that is thankfully disappearing. Autistic people are finally living life in their communities with their families and friends.

But how do we know if a non-verbal adult is showing signs of dementia?

Does a stroke present differently in someone with Autism and Acquired Brain Injury?

Will the several decades long use of medications commonly used for treating anxiety and/or sleep disorders in Autistic people have detrimental effects?

What are the early signs of a heart attack in someone non-verbal with a high pain tolerance?

How do you discover diabetes, and administer insulin , in someone violently terrified of doctors, hospitals and needles?

The list goes on. 

And there are no answers.

Why? 

Because these questions are NOT being asked. 

These concerns are not being debated and addressed. 

Public awareness of Autism was the old fight. Now the battle is to see that the general population realises Autistic children grow to be Autistic adults. And soon they will be Autistic Seniors. The battle is to heighten awareness within the medical community of this very real, and very neglected, concern. No parent should ever have to wish they outlive their child simply because society will not acknowledge that their child's needs grow and change as they age into adulthood and into their later years. 

How will you, as a parent, as an advocate, as an educator, as an Autistic person, as a medical practitioner, as a scientist, as a theologian, as a SOCIETY, how will you ensure that services, supports and KNOWLEDGE are available to ensure autistic people can age WITHIN society. 

Lets start the dialogue

The Look Of Love, Autism Style!

There is a common perception that people with autism, any form, cannot, and do not, love.  

We're here to blow that myth out of the water!!!!

Autism households around the world want to share with you 

their beautiful pictures and stories of love!

As they say.... 

a picture is worth a thousand words!

http://youtu.be/U5SGUunb18A

A Parents' Toolbox For Helping Their Autistic Child in Mental Health Crisis

A Parents' Toolbox For Autistic Crisis

Usually when you hear the term Dual Diagnosis, it refers to a mental health disorder accompanied by an addiction. But it also refers to mental health disorders occurring in those with developmental challenges. With Autism in particular, anxiety disorders , if not present at the original diagnosis are almost universally present in adolescence.

A Warrior Mom's Dilemma: When To Advocate, and When NOT To!!

Photo Courtesy of Chris McKim

I recently went to The Art Gallery of Ontario to decompress and enjoy a fabulous exhibit. Instead I was given a glimpse into my own too-quick to protect behaviour, and how that's not always the best reaction

photo courtesy of Luke Hayne

Decades before I was born, my maternal grandmother Gladys McKinney was sowing the seeds of advocacy that would permeate every ounce of my soul. 

In the early part of the 20th century, my grandmother was bringing 'indigents', the homeless, into her own impoverished home to feed them. 

The Pot that feeds four, feeds five just as well

Nana

My Nana volunteered in every possible socially responsible committee that came her way. She couldn't help it. It was in her very DNA. Having relatives like Louise McKinney and Nellie McClung, two of ''The Famous Five'', the women who fought for and won the right for women to vote in Canada, well, guess Nana was just doing what came naturally! 

For Facebook link to this picture and story, click here

Decades before my brother Phil, Nana's grandsson,  was to stop breathing and suffer an acquired brain injury, my grandmother joined a group of a dozen people who helped ''shut ins'' lead a fulfilling life. In the days when people with challenges of any kind were hidden away or 'housed' this group would make Christmas stockings, fund raise and buy tickets to take groups of physically or developmentally challenged people on outtings and organize get-togethers and picnics. They understood that a physical, mental or developmental disability did not mean you were LESS of a person, and that you still craved and DESERVED a life outside your four walls. All this in the first half of the 20th century.

But she didn't stop there.

In the middle of the last century, Canada struggled to find its social responsibility. Wonderful advances were made, Universal Health Care, The Canada Pension Plan (CPP) and more. But there was still this dogma that stated you had to earn your keep to be entitled to help. And so as the large majority of the VOTING population benefited from our social growth, the most vulnerable of society were falling further behind. 

Nana would have NONE of that. 

She, and the dozen others in her group, marched off to Ottawa and lobbied the government on proposed changes to the CPP. And made a difference. The disability tax credit was introduced and a disability pension created. A special pin was forged and presented to the group as a token of Canada's gratitude to their foresight and conviction. 

for the facebook link to this picture and story, click here

When my own son was diagnosed with autism, just over 11 years after Nana had left this world, I discovered my own need for advocacy.
Oh, it had always been there.
To a lesser degree.
I had ALWAYS rooted for the underdog and I hated the R-Word as long as I could remember. I was never able to stand up for myself, but my entire rather large vocabulary and every ounce of hutzpah would surface anytime I saw someone else suffer an indignity.
In the early 1990s. when Eric was diagnosed, your average GP had no knowledge of Autism. I still ran into doctors, even at the world renowned Hospital For Sick Children in Toronto, who told me Autism was a result of a mother not bonding with her child.




Suddenly, that underdog was my own innocent baby.

I wore my Nana's pin, carried an 8X10 gorgeous picture of my son, again delved into my massive vocabulary and, with a small group of mothers,  rallied every possible level of government for services and funding for people with autism. We were able to establish what would become the PreSchool Autism Services (fully funded ABA therapy), and we were able to spread awareness to the point no doctor would DARE say to a mother now that autism was a result of her not loving her child.
We went from the days when people would kick my small son and I out of restaurants because 'The Retard is making too much noise' (YES, that happened, more than once) from the days where strangers would daily verbally attack a mom and her baby out of ignorance, to now, where there is SO much awareness that the word 'Autism' is commonly mis-used as a politically correct term for all developmental disabilities.

Yes, we've come a long way.

But the fight is not over.

We, the parents of autistic people, still have to fight for an APPROPRIATE level of services. We have to

Necropolis at Huronia Regional Facility (Orillia Asylum)

fight a new battle for adult services. And, with the abolition of Institutions like Huronia Regional Facility (where my brother Phillip spent most of his short life), we are also now struggling to figure out how best to help those with developmental disabilities as they age, and succumb to the same age related illnesses and disorders as the rest of the population. In the institutions people like my brother were kept restrained or drugged. So dementia, or ALS or any number of other disorders and diseases would go undocumented and untreated. Thankfully the institutions are now closed, or closing. Are there supports for those aging in the community with developmental challenges? Little to none. So we battle on
There is also the burgeoning new front of self-advocacy within the Autistic Spectrum. As a parent, and sister, I can't tell you how incredible it is for me to see Autistic people being given the right denied to them up til now.

The right to speak for themselves.

And this is where I myself am failing. The thrill and joy that society has progressed to the point where autistic self-advocacy is not a wish, but a reality battles with my instinct to protect. An instinct that was honed through many years of fighting society and the system, years of protecting my autistic child and my whole Autism Household from society's attacks.

I can't just turn that off. Nor should I. What I need to do is dial it back. A lesson I learned at the Art Gallery of Ontario

Art Gallery of Ontario Atrium

Yesterday I went with my nephew for a culture fix. We bundled up in the cold that is February in Toronto and headed to the AGO, intent on seeing the ''The Great Upheaval''. What I got wasn't a dose of culture, but a personal lesson. One that I didn't know I needed.

The lesson that every advocate needs to learn

When NOT to advocate

As my nephew and I wandered the gallery,I heard a sound. A sound that only Autistic people make. If you live or work or care about an autistic person than you know the sound.
As my nephew admired an Andy Warhol my senses were on alert. The group entered the gallery. It was just my nephew, myself and this small group of autistic young adults with their support people. Rocking, hopping, flapping happily. Humming, cooing, clicking. I fought the instinct to walk up and just hug someone. I tried to concentrate on the art around me, but I couldn't, my attention and every single one of my senses was centred on the group. 

Then a security guard walked in, oblivious to my nephew and I, focusing solely on the group.

And my advocate instincts went into overdrive

Mama Bear exploded.

I was sure he was there because HE was sure the group would be a problem, damage something, bother someone.

But before I could act upon my own prejudice, the prejudice that made me believe I needed to protect this group from this security guard, something wonderful happened.

The group became silent. No humming. No chirping or squealing. complete silence.

I turned my attention from the security guard towards the group of young adults.

They were standing in reverence before a Pablo Picasso.

The security guard backed out of the room, I'm sure he too was feeling what I was. 

That we were intruding on something magical, something almost spiritual.

This group didn't need my protection. I don't even know that the security guard had malicious intent. He too may be from an Autism Household and he too may have had his advocate instincts on overdrive. I doubt I will ever know.

What I do know is that this group of young adults, people who outwardly seemed to need my protection, had made me see my own challenges.

And forced me, through their quiet reverence, to see that sometimes there is no fight to fight.

No Fight. 

Just beauty

To view the facebook post that inspired this article click here

An Open Letter to Those Who, like me, Are Struggling With The Loss of Avonte Oquendo

photo courtesy of Wayne Pollard Photography

From the moment I heard the news that Avonte Oquendo, a young boy with autism from New York, had gone missing from his school, I have been fearing this day. Fearing the day when every mother's nightmare would become reality for Vanessa Fontaine. 

The Autism Household

photo courtesy of Photography By Wayne Pollard waynepollard.blogspot.ca

I was recently asked why I created and so frequently use the term ''Autism Household'' to describe my family.

I thought it was time to talk about just what an ''Autism Household'' is. 

And is NOT.

10 Autism Household survival tips for Planning a Wedding (or other large event)

My Kingdom For a Nap

To Sleep Perhaps To Dream  Photo Courtesy of Chris McKim

One of the things they don't tell you when you get the A-Word diagnosis is that you will most likely NEVER get a decent night's sleep. Sleep disorders, and simply the LACK of a need for more than an hour or two sleep per night is almost universal amongst people with autism. Which means those in an Autism household ALSO suffer from a lack of sleep. Your most intimate fantasies will from now on in centre around SOMEHOW getting 40 winks

Shingle All The Way

Its been a frigid winter in Toronto. We had a terrible Ice Storm that left many people without power for a week or more. As I write this its -33*C outside. As my Dad used to say, ''Cold as a witch's _____'' (I'll let you fill in the blank!). We've been holed up inside for quite sometime. Not easy for anyone, but throw Autism into the mix, and well, things heat up. And not they way you'd like!